Alfie's Story

“Naomi House is a lovely environment, the staff are great and Alfie gets treated like a king."

- Colin, Alfie’s grandad.

Five year old Alfie from Gosport in Hampshire, lives with his mum Sam, dad Rob and his two little brothers, Harry, two and six month old Joshua.

Alfie has cerebral palsy caused by brain damage during a very difficult birth. As a result, he is unable to stand, walk, sit, roll or even play with his toys on his own. He has epilepsy, hearing difficulties and is fed via a gastrostomy. He is susceptible to chest infections and has had many stays in hospital. Alfie needs 24 hour care for all his personal and medical needs.

Alfie has a very close family and together they share Alfie’s care. His mum Sam and grandad Colin shared Alfie’s story with us.

Sam
“Alfie had a difficult birth and suffered brain damage because of a lack of oxygen. He was taken away to the neo-natal intensive care unit where he was given cooling therapy to help prevent further brain damage. This was all a bit of a shock, he was our first baby and we didn’t really know what to expect. We were told that he might die and not even last an hour.”

Colin
“The doctors didn’t expect him to live for the first day but he did and on the third day I remember Sam rang to say they needed us at the hospital. She said they were going to do a blessing around Alfie’s cot because they didn’t think he was going to live. It was horrendous and probably the worst day of my life.”

Sam
“When he was 10 days old, the whole family gathered in the family room at the hospital as the doctors were going to take his breathing tube out. If he stopped breathing then they weren’t going to resuscitate him. It was all very numbing, we didn’t really understand what was happening. He could stop breathing; it could be a couple of hours or it could be a couple of days, we were on the edge the whole time. Rob and I took it in turns to sleep because we didn’t want him to die while both of us were asleep. It was awful.”

Colin
“It starts hitting you that it’s your grandson, and it had gone from all being about my daughter Sam to there being a grandchild. But Alfie’s an absolute fighter, he is stronger than anybody I know and five years later he is still here.”

Sam
“Alfie stayed in hospital for two months. I went home after a couple of weeks, so we were travelling from Portsmouth to Southampton every day. We just wanted him to stay alive and be at home with the family; we lived at home with my parents and my sister. When we got Alfie home he had a nasogastric tube and an apnea monitor, apart from these, he looked like a normal baby. However from six months, he started to be different because he wasn’t reaching any of the milestones. The hardest bit was not knowing what would happen in the future and having our hopes dashed. The doctors couldn’t say to us how long he would live, they didn’t know. I think we were in denial. There were stages where I was just crying, and thinking he might as well have died in hospital.”

Colin
“I was doing my best to support Sam, so I would be doing a day’s work and then doing a night with Alfie and then going back to work the next day. Although work were really good to me I thought why am I doing this? Alfie is my priority so I retired from the police force to be his carer. I can spend all Sunday afternoon with him as grandad, I’ll go home and have my tea and then come back as carer! I love being with him and that’s never changed, it just grows stronger; we have a special bond.”

Sam
“When we first came to Naomi House we thought it was just lovely and I’m a massive fan. We had never left Alfie before, but even though we were a bit nervous, I think because I’m a nurse I know that they know their jobs and it was ok. When we come to Naomi House, we spend most of the time with him but it’s nice not have to do his medication and his feeds. When we take Alfie swimming they get him dressed as he is quite strong and wriggly! You can do an activity such as painting and know that the staff will clean him up and you can just do the fun things. That is something that is really lovely. He loves going in the hydrotherapy pool, as he can’t go in public swimming pools because they are too cold and often don’t have the right changing facilities.”

Colin
“Naomi House is a lovely environment, the staff are great and Alfie gets treated like a king. I can go up to my room at 8 o’clock in the evening and know that I’ve got no worries at all because there is a professional team looking after him. I’ll come down at 9 o’clock in the morning and he’s been bathed, his feed has been sorted out and he’s had his morning medication. It takes all that worry off you for a while and it’s great. During the day, all the things they do with them are fantastic. The children get treated really well with one to one attention and it takes the worry away. I trust the staff and I find it easy to talk to them. I’m very relaxed when I come here.”

Sam
“You don’t chose this situation, but when you are in it, you have to make the best of it and take each day as it comes. I would never wish this on Alfie, but he has really changed people around him. He has made me a better person, he has made Rob a better person and we are stronger together. I do often reflect that Alfie has changed a lot of people for the good. In the first year of his life we were sad about our situation, but even though our whole family dynamics have changed, through Alfie we have met many wonderful and inspiring people.”

Colin
“He is the strongest person I know. He was five in January and after all that he has been through, being able to celebrate is just amazing. I’ve seen adults with less will power, he just seems to know that he wants to be here and people want him to be here. I find it exciting to look ahead. I know he won’t be running round a field throwing a rugby ball, but I see good things for him in the future.”